Introduction: Self-management is considered a potential answer to the increasing demand for family medicine by people suffering from a chronic condition or multi-morbidity. A key element of self-management is goal setting. Goal setting is often defined as a moment of agreement between a professional and a patient. In the self-management literature, however, goal setting is regarded as a circular process. Still, it is unclear how professionals working in family medicine can put it into practice. This background paper aims to contribute to the understanding of goal setting within self-management and to identify elements that need further development for practical use. Debate: Four questions for debate emerge in this article: (1) What are self-management goals? (2) What is necessary to accomplish the process of goal setting within self-management? (3) How can professionals decide on the degree of support needed for goal setting within self-management? (4) How can patients set their goals and how can they be supported? Implications: Self-management goals can be set for different (life) domains. Using a holistic framework will help in creating an overview of patients’ goals that do not merely focus on medical issues. It is a challenge for professionals to coach their patients to think about and set their goals themselves. More insight in patients’ willingness and ability to set self-management goals is desirable. Moreover, as goal setting is a circular process, professionals need to be supported to go through this process with their patients.
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Background: Optimizing transitional care by practicing family-centered care might reduce unplanned events for patients who undergo major abdominal cancer surgery. However, it remains unknown whether involving family caregivers in patients’ healthcare also has negative consequences for patient safety. This study assessed the safety of family involvement in patients’ healthcare by examining the cause of unplanned events in patients who participated in a family involvement program (FIP) after major abdominal cancer surgery. Methods: This is a secondary analysis focusing on the intervention group of a prospective cohort study conducted in the Netherlands. Data were collected from April 2019 to May 2022. Participants in the intervention group were patients who engaged in a FIP. Unplanned events were analyzed, and root causes were identified using the medical version of a prevention- and recovery-information system for monitoring and analysis (PRISMA) that analyses unintended events in healthcare. Unplanned events were compared between patients who received care from family caregivers and patients who received professional at-home care after discharge. A Mann-Whitney U test was used to analyze data. Results: Of the 152 FIP participants, 68 experienced an unplanned event and were included. 112 unplanned events occurred with 145 root causes since some unplanned events had several root causes. Most root causes of unplanned events were patient-related factors (n = 109, 75%), such as patient characteristics and disease-related factors. No root causes due to inadequate healthcare from the family caregiver were identified. Unplanned events did not differ statistically (interquartile range 1–2) (p = 0.35) between patients who received care from trained family caregivers and those who received professional at-home care after discharge. Conclusion: Based on the insights from the root-cause analysis in this prospective multicenter study, it appears that unplanned emergency room visits and hospital readmissions are not related to the active involvement of family caregivers in surgical follow-up care. Moreover, surgical follow-up care by trained family caregivers during hospitalization was not associated with increased rates of unplanned adverse events. Hence, the concept of active family involvement by proficiently trained family caregivers in postoperative care appears safe and feasible for patients undergoing major abdominal surgery.
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Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
We willen de kwaliteit van onderzoek in de kunsten graag verhogen. Hiervoor is het belangrijk dat het ontwerpen van onderzoek op een manier benaderd wordt die zowel de onderzoekers ten goede komt en hun proces faciliteert, als ook dit proces van onderzoek ontwerpen en uitvoeren navolgbaar kan maken. Het doel van het project is dus expliciet niet om verschillende benaderingen samen te brengen in één manier van onderzoek, maar juist om een gedeelde visie te creëren over het ontwerp van onderzoeksmethodologie. Hiermee streven we naar een hoge kwaliteit van onderzoeksprocessen, uitkomsten en impact.Het onderzoeksproject Common Ground bestond uit vier elkaar overlappende fasen:Conceptueel, ethische en filosofische kaderingOntwikkeling van het methodologisch modelKennisdeling en verspreidingInbedding in het onderzoek van HKUHet onderzoek is op verschillende manieren uitgevoerd. Er werd onder meer gebruik gemaakt van gesprekken en interviews, observatie, theoretische reflectie en inbreng uit de onderwijs- en begeleidingspraktijk en de artistieke onderzoekspraktijk.Zie voor meer informatie de HKU-website over dit project.
Significant Others, family care, substance abuse, addiction, substance use disorder, Concerned significant others of a person with substance use disorder face psychological, social and financial problems caused by the subtance abuse of their loved one. Tradionally health care orginizations focus on the person with substance use disorder and pay less attention to their concerned significant other. In the Netherlands there is less information available about concerned significant others of persons with substance abuse. To develop a family care aproach for the significant other it's necessary to provide insight in the charasteristics of the concerned significant others of persons with substance use disorder.
